How Disease Can Bankrupt a Family

Money isn’t always easy to talk about. The author shares details about her personal finances and her life.

Four years ago — seven days after my 30th birthday, and three months before my only daughter turned 2 — I got a cold. Along with the cold, the left side of my face went numb.

When I still couldn’t feel my cheek a few weeks later, my doctor sent me to the emergency room. I laughed at the time, thinking of those news stories about people who take up seats in the E.R. because their doctors don’t want to see them.

But once I was given a CAT scan that showed suspicious but inconclusive results, and then admitted to the hospital overnight, things were less funny. Only an hour after getting an MRI, my neurologist came in and told me that, without a doubt, I had multiple sclerosis, an autoimmune disease that affects the brain and spinal cord, causing such symptoms as loss of balance and hearing loss.

When the doctor left the room, my husband turned to me and said, Don’t let this moment define the rest of your life. So far, I haven’t. But what I didn’t realize was how much my diagnosis would completely reshape my financial life.

I got a $2,500 bill for that hospital visit — and that was just the beginning.

Why My Illness Is So Expensive

Once I researched the medication that my doctor wanted me to take, I realized that it would cost $2,800 a month. Every MS drug is around this price — and there are no generics available now or in the foreseeable future.

At the time, my health insurance through work covered most of the cost. I was responsible for $500 of it, while living in a small apartment, and trying to save for a down payment on a house.

To make ends meet, my husband and I changed our budget and our plans immediately: Instead of the two-story house we’d been eyeing, we purchased a one-story home near my in-laws that could be altered in the future to accommodate my eventual need for a walker or a wheelchair. It would also make it easier for my husband’s parents to help care for my now 6-year-old daughter.

The thing you need to understand about MS is that there is no cure. There’s no getting better — there is only slowing down the progression of the disease. Statistically, my life expectancy is about average, but the last years of my life will look different from other people as my disease progresses. I’m lucky that I now have full mobility, with only the occasional muscle twinge — and I keep it that way with a daily self-injection.